#pkulife — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pkulife, aggregated by home.social.
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International PKU Day today and the start of the summer holidays for our youngest child and PKUer. So she’s double celebrating with a pack of Wotsits and 6 Rowntree’s Randoms while bingeing Star Versus the Forces of Evil. #PKU #PKUday #PKUday2024
#PKUlife #PKUdiet
https://www.espku.org/projects/pku-day/ -
I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife